Brian Walitt and the Psychosomaticism of Fibromyalgia: Another Look

Discussion in 'FIbromyalgia and Pain Research' started by Cort, Mar 14, 2016.

  1. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Brian Walitt, the coordinator of the NIH's Clinical Centers chronic fatigue syndrome (ME/CFS) trial co-authored a paper which stated that both ME/CFS and FM are "psychosomatic disorders". The authors characterized psychosomatic disorders as disorders in which patients subjective experience of their cognitive abilities do not reflect the cognitive losses that show up in studies; i.e. the patients were less worse off cognitively than they said they were.

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    The authors asserted that chronic fatigue syndrome and fibromyalgia are real, biologically based disorders and suggested immunological and epigenetic therapies as treatments but use the "P" word was overwhelming. The word psychosomatic carries connotations of a disease that is "not real" and is "all in one's head". During a recent conference call Walitt asserted that these disorders were biologically based, were not in one's head and were very real indeed.

    I took the recent publication of a Walitt to take another look at him, his hypothesis and cognition in FM and ME/CFS.

    Psychosomatic is not a term that has been embraced by many in FM or ME/CFS. A PubMed fibromyalgia search found only a few studies, out of thousands, that used the term. Whatever Walitt's biological views of these disorders his own perceptual view of them - that they are also psychosomatic disorders - appears to be held by only a few.

    Perceptual Vs Real Cognitive Problems in Fibromyalgia and Chronic Fatigue Syndrome

    In the Chemobrain paper Walitt use of cognitive study results to classify FM, ME/CFS, GWS and other diseases as psychosomatic disorders prompted another look at past cognitive studies in ME/CFS and particularly FM. That look suggested that Walitt's conclusion that "These disorders (ME/CFS, FM, GWI, POTS, etc.) are characterized by distressing subjective cognitive impairment without clinically obvious cognitive deficits" would probably not meet agreement with many. In fact, many studies have found obvious cognitive deficits that they apparently consider clinically relevant. Check out some findings below.

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    Walitt's use of a paper to back up this observation: "Objective differences noted on cognitive testing also correlate poorly with self-perception of cognitive deficits (Tesio et al., 2015)", suggested that he was scrambling to find supportive evidence. The Tesio paper's main conclusion referred to objective cognitive impairments - not self-perception at all.

    In fact when it came to differentiating objective and subjective reports of cognition, the Tesio paper noted "the objective and subjective reports do not capture the same level of definition and, consequently, may not correlate completely."

    Walitt seems to be skating on thin ice in other ways. He used a study which determined that FM patients are not too cognitively impaired enough to be able to drive to back up his assertion that FM patients are not, in reality, all that cognitively impaired.

    Real World Disconnect?

    How does Walitt account for the disparities in his and others assessment of the cognitive issues in FM? One way he is by discounting studies that used stressors such as distraction to uncover the cognitive issues in FM. That's an odd position for the co-author of a Chemobrain paper that proposed using stressors to uncover the physiological basis of these disorders to take.

    Overstimulation.jpg
    How ironic it is, as well, that Walitt discounts the results studies which introduce real world elements such as distraction or stress into their studies while arguing that other cognitive tests lack clinical relevance. One might ask why antiseptic laboratory conditions should ever reflect the real world cognitive issues affecting FM and ME/CFS patients particularly given their problems with distraction.

    Couldn't problems with distraction account for the differences Walitt claims to see between patients perceptions and their results in laboratory testing? Studies do show that ME/CFS patient's brains have difficulty turning off their attention to innocuous stimuli - innocuous stimuli that probably wouldn't show up in a laboratory environment.

    Some Support

    Walitt's hypothesis is not without backing. A recent study did find little correlation between subjective and objective measures of cognition in ME/CFS; i.e. it found no objective differences in cognition between ME/CFS patients and healthy controls). (Most ME/CFS cognitive studies have found problems with cognition.)

    In a recently published study Walitt did not find significant differences between between the cognitive capabilities or in the kind of brain activation between FM patients and controls.

    Neuroimage Clin. 2016; 11: 173–180.Characterizing “fibrofog”: Subjective appraisal, objective performance, and task-related brain activity during a working memory task
    Brian Walitt,a,b,⁎ Marta Čeko,a Manish Khatiwada,c John L. Gracely,a Rakib Rayhan,d John W. VanMeter,c and Richard H. Gracelye

    He, did, however, find that healthy controls were pretty accurate in how well they perceived they did on the cognitive tests while FM patients were off by about 25% of. Furthermore, the FM patients reduced ability to perceive how accurate they were showed up in the reduced activation of some brain areas. It appeared that areas of the brain (PMC/DLPFC, right anterior insula, and bilateral putamen) the healthy volunteers were using to assess how well they did on cognitive testing simply did not get engaged in the FM patients. That could provide a biological construct for Walitt's ideas.

    Conclusions

    The question is how important those ideas are. Walitt believes that subjective perception is the key factor in understanding fibrofog (and no doubt other issues) in FM, and that the cognitive issues in the disease are "clinically insignificant".

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    Numerous studies, however, have found clear cognitive problems in FM and ME/CFS and biological reasons for them are being uncovered. Reduced cardiac vagus nerve functioning was associated with reduced cognitive functioning in ME/CFS. Medow was able to return cognitive function to normal in ME/CFS patients by using phenylephrine to increase cerebral blood flows.

    Cook appears to be finding reduced cognition and altered brain activation after exercise in his Solve ME/CFS Initiative brain study and Lange found altered patterns of brain activation in response to cognitive challenges in ME/CFS.

    Meanwhile Walitt is putting a lot on that 25% difference in perceived cognitive functioning. He'll certainly have a chance to review his ideas during the Clinical Center ME/CFS study. The study will do cognitive, blood, autonomic nervous system, microbiome, saliva and other testing before and after exercise.

    Walit, it should be emphasized, is simply the coordinator of the study; he will not be doing any testing or writing any papers. He will, however, be closely observing the ME/CFS patients and the results. Time will tell what the results will be. One wonders, though, if his views on the "psychosomatism" found in ME/CFS and FM will change.
     
    Last edited: Mar 14, 2016
  2. weyland

    weyland Well-Known Member

    He shouldn't have to wait for this. He can simply read the IOM and P2P reports which, through extensive literature review, reaffirmed the fact that ME is not a somatoform illness.
     
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  3. gowwab

    gowwab Member

    I think it's a huge leap of faith to think that the fact that they are calling Wallit (and don't forget all the others with psychosomatic bent to our disease on this study) CFS expert clinicians will not at the very least muddy the waters.

    These are the exact people we have been fighting for years and they are choosing patients, interacting with patients they will define the the clinical characteristics of the disease. They are the go between with the others in this study and the patients, Walitt or the others have yet to disavow any previous statements about his thinking.
    From the NIH:
    The objective of this research study is to begin to understand the clinical and biological characteristics of ME/CFS.

    I see a lot of wishful thinking about Walitts' ability to do an about face but nothing from him or the NIH that gives me hope.

    I don't want him and the others to become the next generation of experts at the NIH. And after this study he will have even more power as the resident NIH clinical expert. I had a great doctor who wanted to help me years ago and told me Strauss was the guy he was researching as he was the top guy. I didn't know who he was at the time. Will Walitt and Gill become the new Strauss?

    At the very least I would call for the title CFS clinical expert to be taken away from him and other psychosomatic guys. The IOM proved they weren't. We are a small community in a way and we know who the clinical experts are and they are nowhere to found n this study.
     
    Last edited: Mar 14, 2016
  4. IrisRV

    IrisRV Well-Known Member

    I have a couple of issues with Walitt's general approach and perspective. First is the idea that because cognitive dysfunction is not found in some tests, it doesn't exist at all. To my mind, that's illogical. Maybe the researcher is not doing the correct tests to identify the kind of dysfunction the patients have. Cognitive dysfunction is complex. It can't be fully evaluated with a few basic tests.

    He appears to be using the common psychosomatic hypothesis logic which is based on the old "If I don't see it, it doesn't exist" fallacy. No one had found the AIDS virus 30 years ago, either. That doesn't mean it didn't exist.

    Second, he seems to be assuming that any in-range cognitive function should not be perceived as a reduction or loss by patients. Again, illogical. Many PWME were intellectually high-functioning before they became ill. They could lose a lot of cognitive function and still test within normal range. Nevertheless, they are going to notice the loss of function.

    Walitt seems to be assuming that that sense of loss of cognitive function is imaginary when it could easily be quite real, just not measurable by one test. In order to evaluate loss, you need to compare at least two points. You can't determine a difference if you only have one data point. :rolleyes: His conclusions only hold water if he has before and after cognitive tests and can verify no loss of cognitive function.

    For a seemingly bright guy, he seems to be lacking basic scientific logic. Perhaps he drank the psychosomatic Kool-Aid. If you assume (without evidence) that psychosomatic conditions exist, it becomes easy to dismiss any symptoms you can't immediately explain as imaginary instead of looking for a reason for them. It's lazy, sloppy, non-scientific psych thinking, if you ask me.
     
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  5. IrisRV

    IrisRV Well-Known Member

    If the NIH has indeed titled Walitt a CFS clinical expert, then I agree completely. He is in no way, shape, or form a CFS clinical expert and he shouldn't have that title.

    My question is: have they actually given him that title, or are they just calling him the Clinical Director, which is not the same thing. You can be the director of a clinic without being a clinical expert on the diseases being studied.
     
    Last edited: Mar 14, 2016
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  6. IrisRV

    IrisRV Well-Known Member

    Do we need to send him a few thousand copies to make sure he has the reports easily to hand? :p Maybe a little highlighting would help him as well.
     
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  7. Who Me?

    Who Me? Well-Known Member

    Can someone tell me why our fate is in the hands of this :asshat:?
     
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  8. PamJ

    PamJ Active Member

    Cort, you are very calm in the face of Walitt. I am not so calm. I think his written and spoken words about fibromyalgia are somewhere between severely ignorant, and malicious. I don't trust him anywhere near this research.
     
  9. gowwab

    gowwab Member

    Yes. They named Walitt, Gill and Saligan as three of the clinical experts and they are just as bad as Waliit and have 3 more friends on the study with similar beliefs. It took me a while to put this together and I, like most probably, see the word clinical expert in answer to this question below and automatically think one of "our" experts but it doesn't. I think this is crucial. So far none of our clinical experts are involved as far as I can tell except for maybe submitting some patients.

    The whole talk they really want to keep this in house and the only experts they have are these guys. I would rather they have a good clinician with no previous bias or experience than these guys who think they do but obviously don't. I think this is dangerous. Who's to say they won't write papers town the line. it also sates they are looking to define the clinical features of the disease along with the biological in the first sentence. Who else will be doing this but the clinical experts? They say also that this study will have a big impact on further studies and around the world. The stakes are too high. This isn't just another study. This is the beginning of era 2 at the NIH and I just don't trust these guys not to muddy the waters.
    6. Will ME/CFS experts be involved in selecting patients to enroll?

    Clinical experts will be reviewing the selection of patients at three different times in the enrollment process. Most patients will be recruited from well-established ME/CFS clinics that are being supported by the CDC in the Multi-site Clinical Assessment of CFS study (http://www.cdc.gov/cfs/programs/clinical-assessment/). Diagnostic validity will be reviewed as well by an executive committee, which include experts such as Dr. Elizabeth Unger from the CDC and Dr. W. Ian Lipkin from Columbia University. A final assessment of diagnostic validity will be performed by a team of clinical experts at NIH, including Drs. Fred Gill, Leorey Saligan, and Brian Walitt.
    Follow these links for further information about the individuals mentioned:
    Dr. Elizabeth Unger (http://www.cdc.gov/cfs/news/cvbd/)
    Dr. W. Ian Lipkin (https://www.mailman.columbia.edu/people/our-faculty/wil2001)
    Dr. Fred Gill (http://clinicalcenter.nih.gov/about/SeniorStaff/fred_gill.html)
    Dr. Leorey Saligan (http://irp.nih.gov/pi/leorey-saligan)
    Dr. Brian Walitt (https://www.ninr.nih.gov/researchandfunding/dir/bwalitt#.VrzwHNv2aAI)
    7. When will the study start enrolling patients?

    We anticipate that patients will start enrolling in the summer of 2016.
    8. What is the role of the Lead Associate Investigator in the study?

    The Lead Associate Investigator (LAI) will be assisting Dr. Nath with the oversight of the day to day clinical operations of the protocol. The LAI will work with the CDC and the NIH ME/CFS executive committee to coordinate screening of potential participants for the study. He will ensure that participants are provided with clear details of the research study prior to enrollment and that the informed consent process meets NIH standards. He will coordinate care with the local medical providers for participants. He will help integrate the work of all of the multidisciplinary experts who are collaborating in this complex undertaking and to provide clinical oversight for the study participants during their testing and work-up at the NIH Clinical center.
     
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  10. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    The patients are all coming from ME/CFS experts and they will apparently be evaluated by the those three. I'm not happy with them either but if their job is simply to ensure that the patients meet the criteria; i.e. the CCC and other definitions, that that their illness was triggered by an infection then I'm not really worried them...They'll just be box-checkers basically.

    I think you could be right, though, about Walitt gaining prestige from being associated with this study - becoming kind of the go-to guy about ME/CFS. The NIH is not loaded with ME/CFS experts obviously and he is getting in early.

    I wouldn't be surprised if the result smash Walitt's psychosomatic theory though.
     
  11. Phil

    Phil New Member

    I wonder if Mr. Walitt would be willing to debate his theory with (1) the folks at the Mayo Clinic, who have established a department of Fibromyalgia (where I was diagnosed several years ago), and (2) the doctors at the FDA, who have approved, thus far, three medications for this syndrome?
    Let the battle begin!
     
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  12. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    I am calm in the face Walitt for a couple off reasons

    a) he's a coordinator - not a researcher in this study - he will not be doing studies or writing up reports
    b) this study is loaded with great tests done by the other 28 investigators in the study. Walitt has no experience in and nothing to do with immune, autonomic nervous system, exercise, etc. tests- and I'm very confident that they are going to find things.
    c) I've communicated with three people with ME/CFS/FM who have worked with him. One really didn't like him and the other two actually really did like him. They both understood how his ideas could be upsetting but after they got to know him they actually appreciated him (in other ways I guess).
    d) Despite his weird ideas Walitt has done quite a bit of biological research - he is no Wessely; he does not believe that either CBT or exercise (or drugs) are very helpful in fibromyalgia. He has some quirky ideas but he's not a behaviorist and he does want to do biological research...
    e)I believe his strange ideas are going to lose sway quickly as we dig deeper into FM and ME/CFS
     
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  13. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Good question - what does the title of clinical expert mean?
     
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  14. IrisRV

    IrisRV Well-Known Member

    That just makes me ill. Why would people with no experience with ME/CFS (and severe misunderstanding of what constitutes an ME patient) be making the final assessment of diagnostic validity?

    That is worth asking about, imo. Why would these people be considered competent to evaluate diagnostic validity?

    Someone can be a clinical expert in general without being an expert clinician for a particular disease. The question is what does the NIH actually mean in this case?

    All the other stuff doesn't bother me much. It's all paper-pusher stuff.

    I don't see where Gill or Saligan are psychosomatic theorists. They look like straight-up biomedical scientists to me.
    The researchers, not the guys taking care of the people in the clinic.

    :hilarious: :hilarious: :hilarious: :bawling: :bawling: :bawling:

    It sounds like we really need to stay on top of the issue of whether they have a true ME/CFS cohort or just a bunch of fatigued people.
     
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  15. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Thanks for clarifying that. I wonder if the "clinical experts" have to be working in the Clinical Center? If that's true then they will only apply hopefully to studies done at the center.

    I do see that "most" of the patients will come from the multisite study experts... Why not all of them?
     
  16. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    The US Action Working Group has made this issue a top priority.
     
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  17. IrisRV

    IrisRV Well-Known Member

    Do we know what criteria they are using? If they're using ICC, then the clinical experts could be box-checkers because there's not much judgement required. If they're using looser definitions or (heaven forbid) one they make up themselves, then all bets are off.

    Since they are starting with mostly (I agree with Cort, why 'mostly') patients from ME/CFS expert clinicians we trust, the cohort shouldn't be too bad. My concern is that they might eliminate legitimate patients because they don't understand ME. Didn't some UK study eliminate patients with neurological symptoms? WTH?

    Excellent!
     
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  18. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    That would be a great debate! I would love to see some medical debates :)
     
  19. Lianne Sparling

    Lianne Sparling New Member

    "Many PWME were intellectually high-functioning before they became ill. They could lose a lot of cognitive function and still test within normal range. Nevertheless, they are going to notice the loss of function."

    I also have Essential Tremor (ET) along with fibro and see a neurologist (Movement Disorder Specialist "wasn't trained in fibromyalgia"...aargh). Anyway, she provides a basic cognitive test as cognitive dysfunction can be found with it too. I scored 27/30, completely normal. My response was "But I would have gotten those 3 right before!!!". She said her more intelligent patients were more stressed. Maybe because we're talking about a 10% drop in cognition, that everyday I experience that loss in function emotionally because I know what I used to be capable of, and am scared of what future tests may show. ET or fibro, I know my cognitive ability has changed.
     
  20. gowwab

    gowwab Member

    Could you ease my mind and show me where they say all the patients are coming from our experts? I remember hearing that too but the description on the website says only most patients and we don't know what clinics. In a 40 person study that could mean 15 patients from elsewhere. Still seeing no oversight by any of our experts.

    We mostly talk about Walitt but there are another 5 guys on the team with similar views. Lipkin is in there but he's not a clinician. I'm not liking this at all. What are your thoughts on the other NIH "clinical experts" ? How can we get a clean break from the past when they would all have to disavow their own theories to do so?

    Most patients will be recruited from well-established ME/CFS clinics that are being supported by the CDC in the Multi-site Clinical Assessment of CFS study (http://www.cdc.gov/cfs/programs/clinical-assessment/).

    Diagnostic validity will be reviewed as well by an executive committee, which include experts such as Dr. Elizabeth Unger from the CDC and Dr. W. Ian Lipkin from Columbia University
     
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